Andrew's first developmental therapy session

Andrew had his first therapy session with his developmental therapist this past Monday. Megan played with him for about an hour, focusing on teaching him to sign "more please", a two-word combination. We had gotten Andrew to repeat things in the past, but he didn't seem to make multi-word combinations.

Megan played a puzzle game with him, which Andrew responded well to. She took all the pieces of the puzzle, and hid them. Then she made Andrew sign "more please" to get a piece. He didn't sign that combination many times. But she kept reinforcing the combination before handing him a piece. They played it several times. Then they switched puzzles and repeated. And again. It seemed like a very small amount of progress was made.

But I had already read that we need to repeat the practices we observe in his therapies, so we started playing that game several times this past week. And then an amazing thing happened. Today we played it again, and he was starting to sign "more please". Not every time. But more than his first session.

Sara began playing the game with him, and his big sister, Audrey came over to me and wanted to play the same game. She is four and can speak and sign, and loved playing the game. First she would do the signs. Then she said it was my turn, and asked me to do the signs.

This afternoon we all went over to watch a football game. And towards the end of the game, Andrew came over to me with his empty sippy cup and signed "more please" with no prompting. I cheered, "Yeah Andrew!" That put a smile on my face.

The Diagnosis

It seems like a lifetime ago that our pediatrician was saying to us that there was a possibility that our sweet 2 year old, Andrew, might be autistic.  It seemed unreal and I didn't want to believe it was possible, so I just didn't.  But we readily agreed to have him tested to ease our doctor's mind. 

The first evaluation we had was with the Tennessee Early Intervention Services (TEIS).  They nailed down his developmental delay and speech delay, but didn't really see anything that pointed to autism.  (Sigh of relief.)

It was a couple of months later when we received an unexpected call from the Vanderbilt Children's Development Center telling us Andrew was on their wait list to be tested by one of their psychologists.  Okay, so this is the autism evaluation.  After solving a little hiccup with insurance (aren't those fun?), we prepared ourselves for the 4 hour evaluation.

The test itself seemed pretty comprehensive.  They asked me a LOT of questions and played with Andrew in both structured and unstructured activities.  I just knew they were going to confirm TEIS's findings of some developmental delays and a speech delay.  I miss that ignorance.

After all was said and done, the diagnosis was Autism Spectrum Disorder.  No one was more shocked than I was.  I mean, I knew he had some issues, but nothing I had read in my (admittedly limited) research on signs of autism seemed to fit Andrew.

So right there, in front of them (the evaluating team members), I started to cry.  And cry and cry and cry.  I didn't stop crying for an hour.  I cried when I told my husband on the phone while we made our way home from Vanderbilt.  I cried when I told my parents.  I cried as I looked at my sweet boy in the back seat who had, in my opinion, been given a life sentence.

Over the next few days, we grieved.  We grieved the life we had hoped for Andrew and the inability to use the word "perfect" in the same sentence with "Andrew".  And I was so angry with God and the choice He had made for my son.  So angry that, even a week and a half later, I can't bring myself to pray.

Over the next week, we dove into the information that Vanderbilt had provided us.  And, the more we read, the more overwhelmed we became.  There seemed to be two questions pop up for every question that was answered.  And neither of us wanted to trust the internet to give us information.

I know Andrew is the same boy that he was before the diagnosis, that we now simply have a name for what he's struggling with.  It just takes a little while for that information to travel from my head to my heart.  And we have both struggled with the inability to call him "our perfect little boy" anymore. 

Once I was able to get my head above water, I started informing my closest friends.  It was so touching the amount of love, support, and sympathy we received.  One of my dear, sweet friends and sisters in Christ shared a truth with me that has really been a turning point for me in my own journey to process the diagnosis.  She first extended her sympathies and assured me we were in her thoughts and prayers.  Then she said, "Praise Jesus that Andrew was fearfully and wonderfully made.  And while this diagnosis is a shock to you all, it is not a shock to the One Who formed him in your womb." 

At first I thought it was odd that we should praise Him at all, but my heart softened to this truth and I began to see light in the midst of my grief.  Andrew is fearfully and wonderfully made.  God promises this.  God formed him in my womb.  And for whatever reason, this was always His plan for us and for Andrew.  The truth is that He will lead us and equip us on this uncertain road with all of it's ups and downs, twists and turns.  And, even more than that, I can begin to say that Andrew is perfect...because God made him and he is a miracle.

We wanted to start this blog to keep our friends in the loop and to chronicle Andrew's, and our whole family's, journey.  I also hope that we can be transparent as we walk through this, so that anyone who finds this blog after their own child is diagnosed can know that they are not alone.